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CDE Detailed Report
This report contains detailed information about the selected CDEs.
Note: If at least one CDE was selected from a copyright- or trademark-protected instrument/scale then all of the CDEs from that instrument/scale are included in this report.
Disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Sub-Domain: Post-Exertional Malaise
CRF: Core PEM Assessment Questionnaire
Item count: 15 (15 distinct CDEs)
CDE ID
CDE Name
Variable Name
Definition / Description
Question Text
Permissible Value
Description
Data Type
Instructions
References
Population
Classification (e.g., Core)
Version #
Version Date
Aliases for Variable Name
CRF Module / Guideline
© or TM
Sub-Domain
Domain
Previous Title
Size
Input Restrictions
Min Value
Max Value
Measurement Type
LOINC ID
SNOMED
caDSR ID
CDISC ID
C17402
Site name
SiteName
The name of the site for the study
Site Name
  
Alphanumeric
No instructions available
No references available
Adult
Core
3.0
6/21/2013
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
Site name
255
Free-Form Entry
       
C19247
Subject ID
SubIDNam
Subject identification ID
Subject ID
  
Alphanumeric
No instructions available
No references available
Adult
Core
1.0
6/5/2014
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
 
255
Free-Form Entry
       
C57091
DePaul Symptom Questionnaire (DSQ) - Dead heavy feeling after exercise frequency scale
DSQDdHvyFlngAfExFreqScl
Frequency of how often an individual has a dead, heavy feeling after starting to exercise, as part of the DePaul Symptom Questionnaire (DSQ)
Dead, heavy feeling after starting to exercise (Frequency)
0;1;2;3;4;
None of the time;A little of the time;About half the time;Most of the time;All of the time;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57092
DePaul Symptom Questionnaire (DSQ) - dead heavy feeling after exercise severity scale
DSQDdHvyFlngAftExSvScl
Scale related to the severity of the individual having a dead, heavy feeling after starting to exercise, as part of the DePaul Symptom Questionnaire (DSQ)
Dead, heavy feeling after starting to exercise (Severity)
1;2;3;4;
Mild;Moderate;Severe;Very severe;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57093
DePaul Symptom Questionnaire (DSQ) - Soreness next day frequency scale
DSQSrnssNxtDyFreqScl
Frequency of how often an individual has next day soreness or fatigue after non-strenuous, everyday activities, as part of the DePaul Symptom Questionnaire (DSQ)
Next day soreness or fatigue after non-strenuous, everyday activities (Frequency)
0;1;2;3;4;
None of the time;A little of the time;About half the time;Most of the time;All of the time;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57094
DePaul Symptom Questionnaire (DSQ) - Soreness next day severity scale
DSQSrnssNxtDySvScl
Scale related to the severity of the individual having next day soreness or fatigue after non-strenuous, everyday activities, as part of the DePaul Symptom Questionnaire (DSQ)
Next day soreness or fatigue after non-strenuous, everyday activities (Severity)
1;2;3;4;
Mild;Moderate;Severe;Very severe;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57095
DePaul Symptom Questionnaire (DSQ) - Mentally tired after slight effort frequency scale
DSQMntlTrAftrSlghtEffFreqScl
Frequency of how often an individual feels mentally tired after slightest effort, as part of the DePaul Symptom Questionnaire (DSQ)
Mentally tired after the slightest effort (Frequency)
0;1;2;3;4;
None of the time;A little of the time;About half the time;Most of the time;All of the time;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57096
DePaul Symptom Questionnaire (DSQ) - mentally tired after slight effort severity scale
DSQMntlTrAftSlgEffSvScl
Scale related to the severity of the individual feeling mentally tired after the slightest effort, as part of the DePaul Symptom Questionnaire (DSQ)
Mentally tired after the slightest effort (Severity)
1;2;3;4;
Mild;Moderate;Severe;Very severe;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57097
DePaul Symptom Questionnaire (DSQ) - Minimum exercise make physical tired frequency scale
DSQMnExMkPhysTrFreqScl
Frequency of how often an individual feels as if minimum exercise makes him/her physically tired, as part of the DePaul Symptom Questionnaire (DSQ)
Minimum exercise makes you physically tired (Frequency)
0;1;2;3;4;
None of the time;A little of the time;About half the time;Most of the time;All of the time;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57098
DePaul Symptom Questionnaire (DSQ) - minimum exercise physical tired severity scale
DSQMnExPhyTrdSvScl
Scale related to the severity of the individual feeling as if minimum exercise makes him/her physically tired, as part of the DePaul Symptom Questionnaire (DSQ)
Minimum exercise makes you physically tired (Severity)
1;2;3;4;
Mild;Moderate;Severe;Very severe;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57099
DePaul Symptom Questionnaire (DSQ) - Physical drain after mild activity frequency scale
DSQPhysDrnAftrMldActFreqScl
Frequency of how often an individual feels physically drained or sick after mild activity, as part of the DePaul Symptom Questionnaire (DSQ)
Physically drained or sick after mild activity (Frequency)
0;1;2;3;4;
None of the time;A little of the time;About half the time;Most of the time;All of the time;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57100
DePaul Symptom Questionnaire (DSQ) - physical drain after mild activity severity scale
DSQPhyDrnAftMldActSvScl
Scale related to the severity of the individual feeling physically drained or sick after mild activity, as part of the DePaul Symptom Questionnaire (DSQ)
Physically drained or sick after mild activity (Severity)
1;2;3;4;
Mild;Moderate;Severe;Very severe;
Numeric Values
No instructions available
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57069
Post-exertional malaise DePaul Symptom Questionnaire threshold met indicator
PEMDSQThrshldMtInd
Indicator of whether DSQ PEM threshold was met
Was the DSQ PEM Threshold met?
Yes;No;
Yes;No;
Alphanumeric
Guidance on "PEM Determination Method:" The standard method for evaluating the "Global PEM Determination" is a two step process in which the study participant responds to the DSQ PEM questions and the researcher then evaluates those responses in light of other information about the study participant to determine whether the study participant has PEM or not. In making this determination, the researcher or clinician will need to consider whether there are other conditions, such as overwork, that could result in a false positive DSQ PEM subscale response. On the other hand, the researcher or clinican should also consider whether the study participant responded negatively because, for instance, they carefully manage their energy expenditures with pacing to avoid episodes of PEM. In addition to asking questions about workload and pacing, the researcher may also ask what happens to the study participant if/when they engage in physical or mental activity and whether there are activities they avoid because it exacerbates symptoms. In addition to their own examination of the study participant, the researcher may also consider information from other sources like medial records but these should be carefully considered, as they might not reflect an accurate understanding of the nature of PEM.

While the above method should be used in all studies, there may be certain types of studies, such as patient surveys or studies of existing samples in which it is not possible to use this two-step method. In those limited instances, the researcher may be able to use information from other sources, such as patient reports and medical records as the basis of the Global PEM Determination. These other choices, particularly self-report and resports by other medical providers, are not recommended because these reports by other medical providers, are not recommended because these reports of PEM have not been verified.
No references available
Adult
Core
1.0
12/21/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
C57070
Post-exertional malaise diagnosis method type
PEMDiagMthdTyp
Type of method used to determine whether PEM is experienced
What method was used to determine whether the study participant experiences PEM? (Please check all answers that apply)
The 2-step DSQ PEM/researcher evaluation process (recommended);Previously reported by a ME/CFS specialist;Previously reported by other medical provider who is not an ME/CFS specialist;Patient-reported- using DSQ PEM questions;Patient-reported- other sources;Other, specify;
The 2-step DSQ PEM/researcher evaluation process (recommended);Previously reported by a ME/CFS specialist;Previously reported by other medical provider who is not an ME/CFS specialist;Patient-reported- using DSQ PEM questions;Patient-reported- other sources;Other, specify;
Alphanumeric
The following choices are provided to capture the method used to determine PEM:
• The 2-step DSQ PEM/researcher evaluation process (recommended)
• Previously reported by ME/CFS Specialist
• Previously reported by other Medical Provider who is not an ME/CFS specialist
•Patient reported- using DSQ PEM questions
•Patient-reported- other sources
•Other, specify
-----------------------------------------
Multiple choices can be selected if appropriate. The first choice should only be selected when the two-step process described above is used.
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Multiple Pre-Defined Values Selected
       
C57071
Post-exertional malaise experience indicator
PEMExprInd
Indicator of whether study participant experiences PEM
Does the study participant experience PEM?
No;Yes;Inconclusive;Not Evaluated;
No;Yes;Inconclusive;Not Evaluated;
Alphanumeric
Guidance on "Global PEM Determination: Regardless of the method used as described in the previous section, the presence of absence of PEM is captured in this field using one of the following choices:
•Yes
•No
•Inconclusive
•Not Evaluated
No references available
Adult
Core
1.0
12/27/2017
Aliases for variable name not defined
Core PEM Assessment Questionnaire
Post-Exertional Malaise
Assessments and Examinations
  
Single Pre-Defined Value Selected
       
12-19-2018
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